Rarely Heard: Hunter Syndrome

Takeda Pharmaceuticals•podcasters.spotify.com

Rarely Heard is about Hunter syndrome, a rare and life-changing genetic condition and is intended for families, patients, and anyone interested in learning about the disease.This podcast is initiated and funded by Takeda Pharmaceuticals and is intended for an international audience outside the USA and UK. The information shared is for educational purposes and does not constitute clinical recommendations for diagnosing or managing disease. The speakers received honoraria from Takeda for their participation. The views expressed reflect the experience and opinion of the speaker. VV-MEDMAT-45197

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Last refreshed: August 17th, 2025 at 10:35 AM ⓘ

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Episodes

Episode 1: The early signs of Hunter syndrome

Hunter syndrome is a rare and life-changing disease. In this introductory episode, we provide a basic overview of Hunter syndrome, its cause and genetic inheritance. We also go over its common signs and symptoms, as well as the journey to a diagnosis. This information is available to the general public for informational purposes only; it should not be used for diagnosing or treating a health condition or disease. It is not intended to substitute for consultation with a healthcare provider. Pleas...

Nov 10, 2021•17 min•Season 1Ep. 1

Episode 2: Managing the symptoms of Hunter syndrome

Hunter syndrome has a wide range of clinical manifestations and requires a complex treatment and management strategy. This episode details the multiorgan nature of the disease, potential management options, and how they can reduce the likelihood of complications for patients. This information is available to the general public for informational purposes only; it should not be used for diagnosing or treating a health condition or disease. It is not intended to substitute for consultation with a h...

Nov 08, 2021•16 min•Season 1Ep. 2

Episode 3: Improving emotional well-being for families

Parents and caregivers have to deal with many challenges in their daily lives and complicated emotions that affect their well-being. This episode addresses the psychological aspects of caring for a child with a complex and chronic disease. We provide a holistic overview of life with Hunter syndrome and some suggestions for families. This information is available to the general public for informational purposes only; it should not be used for diagnosing or treating a health condition or disease. ...

Nov 07, 2021•16 min•Season 1Ep. 3

Episode 4: A doctor’s perspective: The spectrum of patients with Hunter syndrome

The clinical symptoms of Hunter syndrome appear across a diverse spectrum. In this episode, we are joined by Dr Barbara Burton, a specialist in the disease. Dr Burton discusses how Hunter syndrome has impacted patients in her clinical practice and the challenges in reaching a diagnosis. This information is available to the general public for informational purposes only; it should not be used for diagnosing or treating a health condition or disease. It is not intended to substitute for consultati...

Nov 06, 2021•24 min•Season 1Ep. 4

Episode 5: A doctor’s perspective: Multidisciplinary care for Hunter syndrome

Managing Hunter syndrome is a complex and life-long process, with many specialists involved in caring for patients. In the second part of our interview with Dr Barbara Burton, we take a deeper look at the importance of a coordinated care approach in managing Hunter syndrome. This information is available to the general public for informational purposes only; it should not be used for diagnosing or treating a health condition or disease. It is not intended to substitute for consultation with a he...

Nov 05, 2021•22 min•Season 1Ep. 5

Episode 6: Understanding how patient organizations can support families

Living with Hunter syndrome is overwhelming, but there are many sources of support available. This episode features Bob Stevens (UK MPS Society) and Terri Klein (US National MPS Society), who are very familiar with the challenges that families face. They explain the importance of patient organizations and share practical advice from their many years of experience. For more information on these organizations, please visit www.mpssociety.org.uk and www.mpssociety.org. This information is available...

Nov 04, 2021•36 min•Season 1Ep. 6

Episode 7: A parent’s perspective: Living with Hunter syndrome

The diagnosis of Hunter syndrome compels families to re-evaluate their priorities and rethink their future plans. Bob Stevens joins us again, but this time from a parent’s perspective, to share his family’s journey as his two adult sons navigate life with the attenuated form of Hunter syndrome. This information is available to the general public for informational purposes only; it should not be used for diagnosing or treating a health condition or disease. It is not intended to substitute for co...

Oct 22, 2021•32 min•Season 1Ep. 7

Episode 8: A parent’s perspective: The impact of neuronopathic symptoms

The neuronopathic form of Hunter syndrome can have a devastating effect on families. In this episode, we are joined by Avram Joseph, whose son Kalel is living with this severe form of the disease. Avram provides us with a heartwarming account of how his family has come together to help Kalel and each other manage life with Hunter syndrome. This information is available to the general public for informational purposes only; it should not be used for diagnosing or treating a health condition or di...

Oct 21, 2021•28 min•Season 1Ep. 8

Episode 9: Hunter syndrome: A practical summary

This final episode is an overview of everything we have learned about Hunter syndrome. We also consolidate the practical tips from our guests to give you a summary of their advice on living with Hunter syndrome. This information is available to the general public for informational purposes only; it should not be used for diagnosing or treating a health condition or disease. It is not intended to substitute for consultation with a healthcare provider. Please consult your healthcare provider for f...

Oct 19, 2021•13 min•Season 1Ep. 9

Episode 0: Trailer

Season one of Rarely Heard is all about Hunter syndrome. This trailer is an introduction to the series and a preview of the conversations with our guest experts. Join us on this journey for a comprehensive and holistic look at life with Hunter syndrome. This information is available to the general public for informational purposes only; it should not be used for diagnosing or treating a health condition or disease. It is not intended to substitute for consultation with a healthcare provider. Ple...

Oct 19, 2021•3 min

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